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Old 09-02-2007, 10:49 PM #1
etcetera etcetera is offline
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etcetera etcetera is offline
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Default "chronic myofascial pain" or something else?

I have a problem, and may possibly need an alternate diagnosis. I am really frustrated and tired at this point. After 17 years of chronic pain and degenerative symptoms, I was diagnosed with Chronic Myofascial Pain (CMP) and possible "nerve damage" last year (whatever that means - "nerve damage"?). This was when I was working full-time and had health insurance. I am now a full-time college student with no insurance. I never found out where this suspected "nerve damage" was, so the only diagnosis I have is CMP. I have all of the following symptoms and more, getting progressively worse since I was around 12 years old:

-extremely stiff neck with very limited movement, for 17 YEARS
-constant but migrating pain in my upper back, shoulders, and chest muscles (sometimes it is on the right, sometimes the left). This is NOT "burning" pain, or like pin pricks or needles, it is acute "STABBING" pain, sometimes feeling as if it is deep in the bone itself, I don't know how else to describe it.
-severe difficulty sleeping because of stabbing pains in back
-migraines (headaches with nausea and dizziness), severe light sensitivity
-chronic "frozen shoulder"
-sciatica
-chronic attacks of what one Dr. called hyperesthesia (a feeling like all of my hair follicles are being rubbed the wrong way, extremely sensitive to anything touching me, or even a breeze against my skin)
-extreme muscle weakness in my arms and legs
-inability to grip a pencil tightly enough to write legibly (I tested negative for carpal tunnel, but I knew that wasn't the problem, anyways. Pfffft.)
-sudden muscle spasms and severe twitches, causing me to drop things, knock things over, and sometimes to become temporarily disoriented (this is mortifying, I am only 30 years old!)
-short term memory loss becoming progressively worse, I am often going into different rooms of the house and have no recollection of why I am there or what I was looking for, as if I was senile.
-a general...fogginess? I was always an A student when I was younger, in the top 1% of the U.S. on all standardized tests, in honors classes, started college at 15, etc., but I feel as if my IQ has dropped significantly. I have trouble focusing on more than one thing at once, and remembering the simplest words, whereas I used to be like a dictionary.
-very poor judgement of distances (I walk into things even in my own apartment, despite the fact that they have been in the same spot for years, and I had a really hard time in driver's school, eventually giving up on it altogether).
-shaking/twitching while my body is at rest. My hands shake pretty badly, and I spill things WAY too often.
-slurring/stuttering/stumbling over my words, whereas I used to be very eloquent.
-narcolepsy...? (uncontrollable sleepiness, nodding off despite trying desperately to fight it off, blacking out at inappropriate times. It is like I can't get a deep enough breath of air, and I can't get enough oxygen to my brain all of a sudden)
-my feet swell up and turn purple when I'm on them for more than a few minutes (probably unrelated, and this is even worse when I'm menstruating, so that I can barely walk at all without help)
-when I'm sitting for too long, my hip bones, tail bone, and thigh bones start to ache (as opposed to my muscles aching, it is more like I'm actually feeling the bones ache)

Possible "nerve damage" causes?:

-I was X-rayed and diagnosed with scoliosis, an extreme curvature of the spine, when I was 12. I was told that I may need to wear a metal brace for the rest of my life. After seeing a chiropractor and being in traction every day after school for 1 year, new X-rays showed the curvature to be minimal. However, the pain in my neck remained.

-In 8th grade I was hit in the upper back, right between 2 vertebrae, by a baseball traveling at a very high speed. It knocked the wind out of me for several minutes, and I was in severe stabbing pain, but so embarrassed that I refused to call attention to myself. I sent myself home early afterwards and my mother put ice on it. Probably not it, but I note this because while the rest of the pain migrates, this is a spot that has never NOT been in pain.

-After a work injury 5 years ago (cervical strain), I had X-rays that showed nothing except for that miniscule curve in my spine, and the fact that my neck curves backwards into my skull (which is to say, it curves forward). The Dr. did not seem to think this was a big deal, though. But it certainly looks really weird.


I have not been able to get a single doctor to refer me to a neurologist, except to test for carpal tunnel because of the weakness in my hands (although I tried to explain that I was pretty sure this was connected to the pain in my cervical spine, NOTHING to do with my wrists). Does anyone have any advice?? And can anyone point me in the right direction?? The CMP and "nerve damage" are vague, but before that all my many doctors could come up with were depression (and I can not tell you how depressing THAT is!) or hypothyroidism (but my thyroid levels have been normal for 10 years, and I was just tested again a week ago)... And although I know I have all the symptoms of Lyme disease, I live in California (I used to spend summers in New Jersey swampland as a kid and can remember getting ticks on my clothing, but I can't remember ever being bitten by any, and it seems like I'd remember that, I was so afraid of them!). How can I convince a doctor that I need something other than X-rays for my back?? (I can't believe they keep wanting to give me x-rays and just leaving it at that, as if I'm coming in with a broken arm or something...). I live in a small town, so I'm beginning to worry that broken bones are the only thing they know how to diagnose or treat? But I've only seen general practitioners...

Oh, and the only thing I've found that seems to help with the pain at all is acupuncture, oddly enough. I just can't afford to do it more than once every few months, and it only helps for a few days, then starts to wear off and all the pain is back again.

Thanks for any advice anyone can give me. It is so hard to talk to doctors, they only want to know about one symptom per visit and treat it independently of everything else...
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Old 09-04-2007, 01:17 PM #2
lymebytes lymebytes is offline
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lymebytes lymebytes is offline
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Wink

Hi etcetera. I am sorry you have so much going on.

Lyme disease is the second fastest growing infectious disease after AIDS in the US and the number one vector-borne disease in the US. Ticks are everywhere. Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

To see a list of neuropsychiatric and cognitive symptoms of Lyme, see Columbia University's Lyme Disease Research Studies Overview of Neuropsychiatric Lyme Disease at http://columbia-lyme.org/flatp/lymeoverview.html

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

If you need a doctor recommedation, let me know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Do not give up. You will find out what is wrong.
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Old 09-04-2007, 09:32 PM #3
lailavia lailavia is offline
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lailavia lailavia is offline
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Default You need a neurologist!!

Are you in an HMO? Do you need a referral? You have so many obvious neuro problems I cannot believe you have not had a basic work up. That was an excellant info on Lyme, but I have neuro sx and my neruo has tested me twice (for lyme) as well as numerous other docs, it may not be what is wrong. You need to bring your list to a neuro or find a doc who will listen. Someone will!!! Try calling a neuro's office if you have to, till you find a nice enough assistant or person who will listen and get them to help you get an appointment. I am not saying there is something horribly seriously wrong, but you do need a work up and such. I am being sent to Johns Hopkins for far less and still having hard time getting them to listen to me!!!! Put all your effort into it and please let me know . I currently have been dx with fibro and my nuero doesn't like that word, he uses myofascial pain, I am getting tested for Peripheral stuff now. Sounds like you need some mris.

Get that foot in the door!

PS I am so sorry I missed the part of no insurance. Is there a clinic that could take you, or a teaching hospital anywhere near you?

Last edited by lailavia; 09-04-2007 at 10:14 PM.
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Old 09-05-2007, 01:20 AM #4
tangye5 tangye5 is offline
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tangye5 tangye5 is offline
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Smile Have IGENEX Lab run test for Borrellia

Get tested as quick as you can by the IGENEX Lab in Palo Alto, Ca. Get a someone to let you use their credit card and then pay them back. It will be worth the money. Do not spend years suffering like most of us did.
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Old 09-18-2007, 09:46 AM #5
samsher samsher is offline
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samsher samsher is offline
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Default

Hello etcetera . I have most of your symptoms. I do not have the purple feet, but they have started to swell on occassion. I do not have scoleosis. I do not have narcolepsy. But most of the rest is there. I have sensations in my face as well. Minor numbness or tingles in jaw, lips, cheeks sometimes. Rushes over my scalp, usually the left side. Symptoms of Carpal Tunnel in the left wrist, but I truly don't think it is CT. My EMG's always come back normal. Recently I had a bout of weakness and trembling. I guess it almost meets the tremors critiera. Feels as though my whole body is trembling. Only some of it visiable, mostly in the hands. But I have it visible in the arms and legs and feet if I apply pressure, say as in leaning my elbows on my knees or pressing the gas pedal in my car.

All very frustrating. I tested positive twice and negative once on the ANA test. An auto immune test. I have all of the pressure points of Fibromyalgia (but who cares about that really, no one takes it seriously so I told them don't bother with a diagnosis) I have white tissue matter in my brain scan which they told me could be migraine scar tissue, MS or small strokes. That didn't do me much good except make me worry.

I am just looking for peice of mind. I can live with the pain, I have since I was in my early 30's. I'm 47 now. I just want to know what it is. How I can help it be a little better without a ton of drugs.

The past 6 mo to a year the pain on the right side has increased, keeping me up at night. (neck, shoulder, hip) The pain originally started on the left side in my 30's. Actually felt as though I had broken my collarbone. But I had no accident. Now all of that is on my right. And my trapezia (sp?) muscles in my back and neck are like walnuts. So I finally said yes to muscle relaxants and Motrin. Not thrilled with that. But I didn't know what else to do.

My MRI's have shown increasing degenerative disc. In 1995 I had arthritis and bulging at C6 & arthritis at C7. In 2005 I had bulgine at C5,and C6 and bone spur growth at C5,6,7. I just had another MRI last week and am waiting for the results.

Anyone have any advice.
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